For about the last month, I have been mysteriously ill. I did everything I was supposed to do. I checked my temperature, I evaluated my symptoms, I made doctor’s appointments, I got x-rays, I took medication, I adjusted my diet, and I kept up with my work obligations. Doing what I am supposed to do is not unusual for me, but mysterious illness is very unusual at this point in my life with disability. I am an expert in one body—my own. However, when all outpatient resources failed, I went to the hospital, and there I stayed for five long days.
Hospitals and their staff are not set up for people with disabilities. Seems odd, right? It’s true though. Disability is only magnified while hospitalized. I remember the basics like needing a family member or regular caregiver to assist practically every detail of personal care, but the bigger, overarching messages of the ableist medical model slip my mind when I am not within the walls of a hospital. I regularly guest lecture about disability and always begin by explaining the differences in the medical and social models of disability. Sometimes, when I am discussing the medical model, I wonder if it really is outdated, and I imagine students must wonder this as well. Then there are times, like when I was most recently hospitalized, when I have solid evidence that the medical model is alive and well in 2013.
As long as I am able to speak, I am very good at giving a medical history. I can direct much of my own care. As one of the paramedics said as she was getting me in the ambulance, “Most people with chronic illnesses and disabilities know their bodies very well.” It’s true. I don’t panic too much, at least not outwardly. I know what’s up and I’ll tell you. I can have a knowledgeable, intelligent conversation about medicine. When deciding to admit me, the ER doctor said that I was a well-informed patient who’d done everything I’d been asked as an outpatient but was getting worse. I might have been sent home otherwise (I’m still not sure that wasn’t the right course of action, but I digress.). These are individuals who “got it.”
Enter the internal medicine doctor who decided to prescribe a couple of antibiotics. When discussing one particular antibiotic with me, he assumed I’d taken it previously. When I said I hadn’t, he was genuinely surprised. No, permanent, long-term disability does not mean that I have taken most drugs. It does not mean that I am regularly in poor health.
After the floor nurses learned that I am a part-time instructor at a university, that was the big news each shift. This alone was pretty inconspicuous and actually led to nice conversations as some of the nurses had either graduated from our nursing program, were enrolled in the program, or had taken prerequisites for nursing programs at other schools. The distinction appeared with questions of how I manage my bladder at work and if I need an assistant with me at work. Actually, the only real assistance I need to do my job is someone to open and close the door to my classroom. Other than that, the campus is accessible to me. Outside of that hospital bed and room, I have negotiated my life so that I am able to do as much for myself as possible. It is more than some people can do and less than others.
Finally, I received a call from a nurse case manager after I was discharged. These are quite humorous to me because the case managers tend to find there is little to nothing for them to impart. I’m not that smart, I’m really not, but I have found that in order to live as well as possible with disability, you must know as much as you can about your body and its needs. This makes the call to me an easier one. However, near the end of our call, the case manager said, “So, since you’re a quad, I’m assuming that you’re mostly bedbound?” No, that would be very incorrect. I informed him that I use a power wheelchair and am up for approximately 12 to 14 hours per day.
It’s hard not to sound defensive when answering questions like these. The assumptions of dependence and inaction are more rampant that I’d like to think. They are also diametrically opposed to what I experience when I am teaching. My students expect nothing less of me than they expect of other instructors or professors. Sometimes I wonder how to best answer these questions. Do I state matter-of-factly, as I have done with this recent string that I do not need much assistance, that I am not living on antibiotics, that I do not need to be in bed all day, and just move on with the conversation? Or do I muster the gumption to ask why they are asking their question?
I asked why someone asked me a question a few months ago and the answer was enlightening and infuriating. A short-term caregiver seemed endlessly fascinated by my menstrual cycles. No, it wasn’t the linking up of such cycles, but rather the fact that as a disabled woman, I actually have them. Many, many caregivers over the years have been surprised that I menstruate, but none have been so endlessly vocal about it. Finally, one day she asked “whether they ever thought about doing a hysterectomy.” I explained I was only 10 years old when I was paralyzed and that there was no need to do any unnecessary surgery on any part of my body. I was so enraged that I finally summoned the courage to question her question. She said that she figures she’s had her children. I understood. I informed her that people with disabilities can have sex, enjoy sex, and their partners can enjoy sex with them. I informed her that people with disabilities can have children and do have children. I said, “I was only 10 years old when I became paralyzed. Imagine that it was you, because it could have just as easily been you. Would you not have wanted to be a mother? Isn’t that a very important part of your identity?”
Disability and illness do not happen in a vacuum. They can happen to anyone at any time. We are not less human. We are not here to fulfill tired, outdated assumptions. I do not discourage questions, but I had hoped that medical professionals, having actual medical knowledge, would make fewer assumptions about limitations. This is not the first time I have written about the medical system’s shortcomings, and it probably won’t be the last, but it serves as a reminder that assumptions must be challenged for change to occur.